My journey with SMA Type 1

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Monday night decline through now

Monday morning was rough. Monday afternoon was really good! And then came Monday evening…

Logan was really fussy. We aren’t sure why. When we laid him down for bed, he fussed every few minutes. We knew it was going to be a long night ahead. He fussed almost every hour, all night. We resorted to morphine to try and help. Yeah…the sleep only lasted an hour. We tried everything, stopping his feed, burping him, turning on Little Einsteins, etc. Finally around 9:30am we burped him and what looked like stomach acid came up into the tube. After we got it out, he seemed to rest easier. We thought he was just recovering from the night before, until around 1pm.

We decided to wake him so he would sleep that night. However, he did ever really wake up. He was up for maybe 30 min before falling asleep on me. He didn’t wake up when I moved him to the couch. I hooked him up to his pulse ox so I could go make dinner around 4:30. Logan was still sleeping. He did wake up for about an hour around 5pm then went right back to sleep. Around 8pm he woke up crying. We rushed to administer morphine and reposition him. It took over 45 min to get him comfortable again. He gave back into sleep as I massaged his little foot and toes.

The next hour was the toughest Brett and I have experienced yet. We sat talking about everything in tears. We have done so much more to Logan than we originally planned. We did this together every step of the way and have no regrets. However, we talked about him turning 10 months on Monday and Mothers Day the Sunday after that. We discussed taking the oxygen off of him and starting a schedule of morphine and ativan. Brett has a hard time hearing Logan cry. Its always been that way though. He feels sleeping and comfortable is better than awake and crying. I feel that way too…kinda. Its hard. I never thought it would come to this. I mean, we knew it was somewhat inevitable without a treatment or cure, but I didn’t “think” this day would ever come.

We have talked with our hospice nurse and we are trying to find where something went wrong. He is now considered lethargic 😦 Kind of like last time. We think the Gabapentin may be the cause again. Only this time because of a build up in this body. We are fairly certain it runs through the kidneys and we have noticed the past week he has been dehydrated. We are also trying a new medicine to help with stomach metabolism in hopes it will create easier bowel movements and he will be able to take in more formula. I’m not sure if this will solve the problem, but we have to try.

Logan slept pretty much all day today. He was awake less than an hour total. He is right next to me as I type. He looks peacefully. His heart rate is high and we are suctioning out thin, sticky junk about once every two hours. But his color still looks pretty good and he looks as beautiful as ever. Even with his hair a messy, dirty mess 🙂

29 thoughts on “Monday night decline through now”

Please, know that I pray for your sweet family, and even sweeter boy EVERY night. His precious face is forever etched in my mind, and I see it as I pray. The Lord wont bring you to it, if He can’t bring your through it, and you’ve got some pretty awesome prayer warriors on your team. I will continue to pray for your peace of mind, comfort and sanity (lol), and for Logan’s eternal peace and comfort. God bless you all.

As these situations arise you are doing what you feel is best in your heart. DO not second guess your actions based on what you initially planned. You are doing what is best for Logan at that time and you will know when it is too much. I think about you and pray for your family every day. Much love.

My thoughts and prayers are with Logan, you, and the family. You are doing a wonderful job! I’ve been following Logan’s journey for awhile now and could only hope to be half the mom that you have been to him. He is truly blessed 🙂

You and your family are so amazing for all you do. Logan is such a beautiful little boy. I have a July 2012 baby myself and I don’t know if I would have your strength and courage enough to share my story. I am praying for Logan and you all ♡♡ Brittany Iverson, Bentley and Ethan McNeill

You both are so courageous, I know this wasn’t the path you wanted or expected but having as much as you have to deal with you are both so strong. My heart goes out to you and your family in this difficult time.

I’m in tears reading this, I’ve followed baby Logan’s story from the beginning (I’m from the july 2012 babycenter group). You and your husband are amazingly strong parents, Logan could not have been blessed with a better family. I love seeing his adorable face everyday on my newsfeed. I just cannot fathom what you two are going through. but I do know that when the time comes; you, your husband and your older son will have the most beautiful angel watching over you and he will be thinking what a wonderful time he had on earth thanks to his two loving parents.

Tia & Brett~,
Loan is where he is meant to be, in you’re family’s loving arms. After reading this devastatingly heartbreaking update (btw, ty) I felt moved to turn off my evening program, and go pick my Katie up and sit in her room, rock her and pray pray pray for your family. How is !ucas?
After awhile of rocking and continued prayer, I had an overwhelming sense of peace ( all of this prayrr is for your family) and just I guess this sense that He is there, and watching, and we’ll, I know it seems strange, but just that He is already there with you guys. The heartbreak I experience as I read your updates always leaves me feeling so empty, helpless to assist your beautiful family. This prayer felt different, as I was immediately comforted knowing He is there with you all as you travel on this journey. I’m sorry Tia, I know this post seems strange, but it felt important to me to share with you. He is there. He is watching. He is comforting our lil Logann as he rests.

My thoughts and prayers are with you, Logan, and your family. Our sons are only a few months apart so I can’t imagine what you are thinking, but I can tell that you and your husband are very strong people.

Thank you for sharing your story and opening my eyes not only to SMA but to how blessed I am, making me more thankful than ever. It brings me to tears just seeing your beautiful litle boy, I just want to hold him. I pray to God that you find the strength in him to go through whatever it may be life has ahead of you. And that you feel support in all the love and positive thoughts we send. I also pray that baby Logan feels Gods grace and love as well. I hope he gets and feels better too..

I am speaking from experience when I say, your precious baby is such a special little boy and it is so hard to see them hurt, but, when you know they are in Jesus’ arms so safe, pain free, laughing and happy always, with all the other little ones, oh my, it is a great relief. And I say that with a heart full of impathy and love for you all. You are doing and have done everything right, at the time it was to be done. We have to let hindsight not pull us backward. God knows what is best. By, our baby giving his life for his daddy, his daddy then knew he needed to obey God’s calling and he was baptized into Jesus and remained a Christian til death. So, there are so many blessings that we cannot see. Just have a deeper faith and look forward to the great reunion, later on down the line. Logan is a beautiful little boy, and I love him, too.

You are all such amazing people. My heart aches in your sorrow and soars in your joy. Logan is such a precious baby…and so deeply loved. From another July 2012 family, you have let us all become part of your family. Forever in our hearts.
Levi, Courtney, Ashlyn and Trevin

Tia and Brett: I have been following you since my daughter told me about Logan(in your baby group) and his heartbreaking story. I often pray for your family and am confident that He is right beside you every minute, and remember He is also with Logan right now. Logan is such a precious child and will always be watching over your whole family forever. Remember that your love, strength and grace will never be forgotten. God is there to give you all strength when you need it. Everyday my heart breaks for you.